Written by Professor Jennifer Tieman (@JenniferTieman), Director, Flinders Research Centre for Palliative Care, Death, and Dying.
This year the intersect between World Hospice and Palliative Care Day, marked on the second Saturday of October, and Carers Week which started on Sunday 13 October, was particularly meaningful for RePaDD. It provided the perfect opportunity to launch the findings from our forum on unpaid carers supporting people with life limiting illnesses.
Carers Australia reminds us that carers are people who provide unpaid care and support to family members and friends including those that have a terminal illness or who are frail aged. Carers are an integral part of Australia’s health system and are the foundation of our aged, disability, palliative and community care systems.
Earlier this year we held an Unpaid Carers’ Forum bringing together carers, researchers, service providers, politicians and decision makers to talk about the realities of caring for someone who is coming to the end of their life. The report on the forum discussions and findings has been completed and was released this week to acknowledge the critical role that unpaid carers play in enabling choice and providing support for people living with a terminal illness and those coming to the end of their life. Some of the key issues from the forum are summarised below:
- The community does not acknowledge and respect the contribution made by carers and we need to build awareness of the role and value of carers generally and specifically among those working in health and aged care services.
- There is real complexity in finding the right information in a timely and easy way. Carers of people living with a terminal illness are having to access and address multiple layers of information. We need to establish meaningful pathways to information.
- Not enough is known about the carer journey. Mapping the differences and similarities in carer journeys over time could help support strategies around identifying, personalising and tracking how well we are meeting the needs of carers in the carer journey.
- Australia’s diversity is well established and continues across the life course through to the end of life. Networks and needs can differ between groups. Carers from different backgrounds can be unintentionally excluded from access to services or may be offered services that are not appropriate to the context and culture.
- Carers frequently identified the time and effort in finding services and supports they needed, and the frustration they experience in trying to provide complex care to the patient while dealing with bureaucracy and multiple agencies.
- The importance of policy being evidence based and reflecting an understanding of the characteristics and barriers experienced by carers was seen as essential. A call for evaluation that monitored the effectiveness of directions was seen as necessary to underpin meaningful change.
Many of the issues raised in the forum were reflected in data shared by Carers SA from the 2024 National Carer Survey. Both the survey and the forum findings highlight the importance of data, carer involvement, policy changes, and research to address carer issues and establish workable solutions. With an ageing population and increasing levels of care needs related to chronic disease and multimorbidity, recognising and caring for carers is critical to the wellbeing of Australia.